Clinical trials for Alzheimer’s treatment face global shortage of participants

Despite the arrival of a new class of drugs and a growing pipeline of medical care, clinical trials for the treatment of Alzheimer’s disease continue to face a global shortage of participants.

That’s the message by Alzheimer’s Disease International, a global federation of Alzheimer associations. In their report released Monday to mark World Alzheimer’s Day, it warns that the shortage of trial participants risks slowing progress in dementia therapies.

The group’s research has found that 158 potential dementia therapies are currently being tested through 192 clinical trials worldwide.

In recent years, the arrival of “disease-modifying” drugs such as lecanemab and donanemab has boosted hope that there may be a cure for the neurodegenerative disease one day. These drugs are designed to slow the progression of the disease rather than just mask or manage symptoms like in older drugs.

Viewed historically, “the field is changing with remarkable speed,” the report said. “Blood tests are emerging, computational drug discovery is accelerating, and the pipeline has become broader and more sophisticated than at any point in history.”

To sustain active clinical trials, and given the high rates of people rejected in the screening process, an estimated 350,000 would need to apply to join the trials, the group said.

However, a range of factors, including misunderstandings about research and the limited awareness of opportunities to participate in the trials, hamper people’s participation, it said.

In Japan, there is a general lack of understanding among the public about how drugs are developed and approved, says Noriyo Washizu, a nurse and member of Alzheimer’s Association Japan, a group consisting of people with dementia, their care providers and healthcare professionals.

“Clinical trials are often perceived as a special arrangement involving special people,” Washizu said. “Many people who are taking medications daily, be they for blood pressure or for osteoporosis, don’t understand that there’s a rigorous testing process behind them, and that we are receiving the benefits of such trials.”

She also said that a paternalistic culture remains pervasive in Japan’s medical industry, with a lack of support for patients to make informed decisions about their own health. This leads to patients’ aversion to voluntary participation in clinical trials.

Washizu said information about clinical trials should be easy to access, fair and based on scientific evidence.

“Information should come not only from pharmaceutical companies, but also from governments and research institutions,” she said. “People need to be able to access this information easily and make their own informed decisions.”